Will the indifference of the UK authorities to ME claim one more life?

I want to share with you the dire circumstances of one of the ME/MCS sufferers in the UK. She has given her permission for me to share her situation on the forum and to reveal her identity.

Gillian has recently celebrated the fifteenth year of living in a tumbledown, mould-ridden, wet and often freezing subsiding shack, which is situated in the middle of an organic field in Somerset. Gillian is no willing drop out from society, but a highly intelligent and qualified biochemist, who was a world leader in her field....................until she developed ME.

Gillian became ill following exposure to toxic substances that she could not avoid because of her job. Like many of us she then developed M.E. and Multiple Chemical Sensitivity. She became the worst case in Europe and just the tiniest exposure to any synthetic chemical is a life-threatening experience. Fifteen years ago, Noel Edmonds rescued her from her previous site and dropped her by helicopter to the organic field where she has now lived with no mains electricity, water or gas ever since. She and her few supporters campaigned for many years for the provision of a chemically free 'safe house' , and, as a consequence, she is clearly regarded as a nuisance by the local authority who probably fear that she could set an expensive precedent. The campaign is long since over and there is no hope now that she will achieve her dream of being able to live in a house where she can continue to work as a biochemist and use her wealth of knowledge to help others with ME and MCS.

Despite the severity of her illness, no NHS doctor visits her and she is denied all appropriate medical care. She has no GP and no one from any of the organisations will get involved. She has been vilified by the Somerset County Council, who refuse to accept the medical reports written about her by doctors who have some understanding of her illness. A professor of medical science came from the north of England to see her and he has tried to intervene on her behalf, but the Council refuse to listen to him or to any of the other doctors who have an interest in the condition. She is one of the best researched cases in Europe and has a wealth of medical documentation proving the severity of her condition. At one time, the cost of her treatment of IV drips that enabled her to lead a limited life was ring fenced, but that promise has long since been broken by the health authorities.

Gillian has large weeping sores that have no dressing. Quite recently, a nurse from a local practice visited her unofficially. She was shocked by Gillian's state and said the least she could do was to go to the surgery, collect some dressings that Gillian has found she can use without severe reactions, and return to dress her large open sores. A little later Gillian had a phone call from the nurse to say that she was terribly ashamed to say it, but the doctors forbade her to return as Gillian is somehow blacklisted. It seems not to matter that such an attitude is completely against the law. Gillian is treated as a 'non-person' because she has ME/MCS. Quite simply, one can only conclude from their lack of care that they are waiting for her to die and they are making her continued existence impossible.

In the summer of 2009, the Council informed Gillian that they were going to bulldoze her shack down. They offered her a smelly old caravan in the middle of nowhere as alternative accommodation. It was full of plastic fumes to which Gillian reacts badly and a doctor informed them that it was totally unsuitable. The Council ignored the doctor's letter.

On the day of the eviction, a few others who have ME went to Gillian's shack and stood guard. Some bully boys turned up and probably weren't overly daunted by a small group of ailing ME patients. They were rather more intimidated to suddenly find the lens of a Westcountry TV camera shoved in their ear, as they were planning to tackle Gillian. Someone in our little group had tipped them off. They withdrew, but are planning to return in a few weeks time.
I have been informed that they are planning to apply for a court order to drag this very sick woman out by force and dump her on the verge as they say they have fulfilled their obligation to her by offering the totally unsuitable smelly old caravan. I believe the order has been granted. The date is set for May.

I have just spoken to Gillian. She is freezing cold, with a frost bitten toe, which she believes to be verging on gangrene. She has no electricity or any form of heating. She has always relied on some specially manufactured candles for warmth. She would warm up stones on the candles and then cuddle them for heat and also cook on them. Now she has no money left for candles and is freezing.

At the time of writing, the hut is full of water because trenches outside the hut have collapsed. There is 4 inches of water throughout the shack and has been for weeks. Her clothes are wet, cold and filthy. She has no means of washing them. Her elderly mother always did this for her, but now she is in her 80s and can't help her any more. Her make-shift bath is full of sewerage, as the toilet, such as it is, won't function properly and just overflows into the bath.

Gillian says she hasn't eaten since last year, but has lived on cocoa powder and vitamin tablets. She is in severe, chronic pain, has little sight, rotten teeth and has run out of her oxygen supplies, which the NHS won't replace. When she has tried to get help, she is told by the authorities that the only doctor whose report they will consider will be that of a psychiatrist, who does not accept ME or MCS. Of course, they are probably hoping, it seems, to section her. However, moving her, Gillian believes, would result in her death. The professor of medical biochemistry has put in writing that the Somerset authorities are about to become guilty of corporate manslaughter. This doesn't worry them it seems.

Gillian is desperate. She cannot face going through another winter in freezing wet conditions and with no sign of help. She can no longer make any outgoing phone calls (her only modern day necessity) because she has no money to pay for them.

I arranged to have Gillians blood flown out to the US for testing for XMRV in the hope that a positive result might help her cease to be a non-person in the UK medical wilderness. Bearing in mind, however, that Professor Wessely stated in the e-BMJ that even if the patient is positive for the retrovirus , We will not treat them, I guess it is a vain hope.

Her situation is so severe though that she feels that she cannot continue to live until the result is ready and is planning to take her life soon. She has asked me to make her result known should she be positive. Gillian also wants you on the forum to know her story.

Gillian is incredibly knowledgeable about the biochemistry of our illness, and I think she would be a valuable asset to the WPI. Sadly, though, I think her living conditions are so dire that I don't see how at the age of 56 and being so severely ill that she can continue to exist in such appalling conditions.

I feel at a loss know to help her further. She needs a team of helpers to keep her alive and to make her life bearable, otherwise I don't think she will be with us much longer. Her death would be a terrible loss to the ME world as she has invaluable knowledge about our illness and is herself she best researched case in Europe.

The situation is about to take a turn for the worst as the council are planning to re-tarmac the tiny road that skirts the field close to Gillians hut. They are well aware of the serious and potentially fatal consequences this will have on her. Given all the circumstances, it is hard not to conclude that they may feel that the potential outcome might suit their purposes and solve the problem for them.

Over the last few months of the severe winter, a few UK ME patients have been sending her water, hot packs and other essential items through the post to keep her alive, but this is not sustainable in the long term.

If Somerset Council do not change their plans and Gillian loses her life as a consequence of their actions, as they have been informed by the professor, they will be responsible of corporate manslaughter. They need to know that the global patient community is watching. At least now they will no longer be able to bury her while the world..including her community looks the other way.

Gillian desperately needs advocates and money to keep her alive.

Will the indifference of the UK to this devastating illness claim yet one more life?

Will anyone care?

If anyone would like to know about Gillian McCarthy, you will find a lot of information about her on the Internet.

Hi Country girl, what can we do to help? Please say. Is there a fund for her or someone to write letters to. We ALL need to get involved to help not just one or two from the U.K. I am housebound, but i can try and help from here if i can.

A devastating situation. Wish I could aid but unable to travel. I well know difficulties with Docs who can't or won't aid, but are all possibilities exhausted - Citizens Advice Bureau who know the legal obligations of Councils etc. Like justy - I wonder if there is a fund we can donate to ? Are all Benefits claimed ? No running water or heating in present Housing is just scandalous (not real housing is it). Let us know what we might do.

Hello Country girl - this is too horrible for words. Has England gone mad? Surely if all send a little bit somewhere it could help Gillian somehow? Please let us know and I'm sure the community here will do what we can.

I wonder if there is anyway possible to get a "reputable media outlet" interested in this situation? We could only hope that it generates some aid for her and possibly into a very positive story for ME. I know that most of the media there is controlled by "Murdock", but if it produces ratings then he is good as money is all that matters to him (I mean this in a business sense).

This has probably been tried before since she is in such a dire situation though. If there was a fund setup somewhere I'll try and donate something.

Thank you everyone on Gillian's behalf for your kind offers of help. Up until last year, she had her father to champion her cause, but, very sadly, he has recently died and her mum is now in her 80s and unable to help her daughter.

It is too late in the day for my remaining brain cell to be functioning, but before I hit the hay I wanted to say how much I appreciate your responses in this very worrying situation. Gillian will be thrilled to know that people care about her plight.

Yes, there certainly are ways everyone can help and thank you for your kind offers.

We know from experience there is no point in trying to get the media involved. One of the editors of a national daily investigated why she can never gain positive publicity and it appears there is some type of 'gagging' order on this story. I'm not clear on the details.

My great concern is that many very kind people over the years have tried every avenue to help, but everyone who becomes involved is ill and have fallen by the wayside and Gillian seems to be mostly on her own now. This makes her very vulnerable, especially as the community where she lives do not understand her problems and will be only to glad if the council take action against her. This they are planning to do.

Her very great need is the construction of a chemical free 'safe house'. Land has been donated and a company called Safe-as-Houses has been set up, but it seems to have lapsed. G. needs people who would join the project to help oversee the building and the fund raising. She needs someone who would research the charities who would be prepared to donate funds. Little known organisations do exist that contribute funding for this type of scheme but they need research and this takes energy-time. A suitable house is the main goal so that G. can lead some sort of life,
even if she cannot leave the vacinity of her property. The Council, however, have typically been very difficult as they have refused to give planning permission unless other houses are built alongside, which defeats the object as she would not be able to tolerate the chemicals produced by adjacent dwellings. However, until there is some funding, the council's objections are academic. What would be wonderful if a fund could be set up and we all donate a small amount towards the house. This is probably just an unrealistic dream as I don't know that there are enough of us to raise the funds that we would need. It is estimated that we would require about 350 000. Gulp!!!!!

In the short term, Gillian's greatest need is a computer so she can continue her own advocacy and keep in touch with the rest of the ME/CFS community.As a biochemist and a world leader in her field, she has a wealth of knowledge about our illness and it is a terrible waste that she doesn't have contact with most of us. She has so much to contribute.( She is, by the way, very happy to speak to anyone on the phone, if you would like to speak with her. Sadly, she can no longer afford to pay for outgoing calls.) A computer, of course, would answer so many of her needs and enable her to take some control, over her own life. She requires a specially adapted, shielded one and she tells me that these are only to be found in the US. I gather that they are Dells, which are then modified and can be shipped anywhere. I think the cost is high, but raising funds for something like this would not be beyond our capabilities. It would be wonderful if we could manage to obtain one of these computers for Gillian. BT have said that it would be possible to provide a broadband connection, even though it would be very slow, to her present shack. Do you think this could be within our capabilities? I know it would thrill Gillian if we could achieve this and it would give her some hope and maybe save her life.

In answer to the question about benefits, no she doesn't have all she is entitled to. However, the seriousness of her illness is not recognised, of course, and she cannot tolerate the chemicals that assessing DWP doctors bring with them. They won't take that into consideration and, anyway, have absolutely no idea how to assess her. She has no support from any NHS doctor and the private medics who have written strong letters on her behalf are ignored.

If people are prepared to donate some money for Gillian's needs that would be wonderful, although I must confess to not having the foggiest clue how to set up such a scheme. It might be wiser anyway for donations to be sent direct to Gillian. As she has been unable to leave her tent and then her shack for about 20 years, she has no access to a bank and cheques that we have sent her have been made out in her mother's name and she then pays for her daughter's needs from her account.

The fact that this story has no been presented afresh on a public site might just help protect Gillian from the actions of the council as I can alert you to any moves they make and we can inform them that we are watching their moves and attempts to get rid of Gillian.

Please everyone, if you can think of any way to help her and stop the Council from threatening her life by re-tarmacing the lane adjacent to her lane and forcibly ejecting her from her shack before suitable accommodation is found for her, please do contribute in any way you can. You may just save her life.

I am waiting for Gillian to answer her phone as I will read your messages to her. It would be great if some of you would be prepared to call her as she lives in near-total isolation.

I will post her responses to you here.

Unfortunately, she had a bad fall a few days ago which left her unconscious for a long time and she is finding it difficult to speak following the accident. I will her phone again in a short time and get back to you as soon as I can.

Hello, Where could I find out more information about the computer requirements? I have no idea if it would work, but I'm willing to call Dell and see if they have a charitable giving office of some sort. If Dell would donate the computer then the only cost would be the freight - which would still add up to a bit.

A computer, of course, would answer so many of her needs and enable her to take some control, over her own life. She requires a specially adapted, shielded one and she tells me that these are only to be found in the US. I gather that they are Dells, which are then modified and can be shipped anywhere. I think the cost is high, but raising funds for something like this would not be beyond our capabilities. It would be wonderful if we could manage to obtain one of these computers for Gillian. BT have said that it would be possible to provide a broadband connection, even though it would be very slow, to her present shack. Do you think this could be within our capabilities? I know it would thrill Gillian if we could achieve this and it would give her some hope and maybe save her life.

Thats a great idea to ask dell to donate a computer. Does anyone know how we can set up a fund. It could be for things such as the computer and ;living costs but could aim for raising enough for a house. 350,000 is a lot of money but not impossible to raise worldwide. Like everyone here i have very limited resources energy and health wise, but i want to try and help. Please send my best to Gillian and tell her i am thinking of her.
I saw that the guardian covered her story briefly in 2008, can they not follow up?
Could you perhaps give us the county council address and we could at least write to them so they know we are watching?

Write to us
Somerset County Council
County Hall
TAUNTON
Somerset
TA1 4DY

Perhaps it would be worth people writing to them or sending an e mail so that they know we are watching the situation.
Sorry i just wrote a longer reply but it gpot lost and i cant remember what i said. Please send my best to Gillian. Does anyone here know how to set up a fund for her. Fo example it could pay for things like the laptop or for a private nurse to make a visit for wound dressings etc, or tpo buy medical supplies, perhaps ultimately the house? could someone contact Noel Edmonds again maybe, give him a nudge.

Dear Sirs,
I am writing in regards to the proposed eviction notice served on Ms Gillian
McCarthy of The StopGap, Shepton Montague, Somerset. Ms McCarthy is disabled
by severe Chemical Sensitivity (CS), requiring a home free of chemicals, mold, and
EMFs (electromagnetic frequencies). Any exposure to offending triggers sets off a
cascade of severe, unmanageable symptoms. Her life is in danger and she is in critical
need of appropriate housing after 10 years in this 'stop-gap' situation. The conditions
under which she currently lives are deplorable, without running water and with a
black swamp running under the shack. I don't believe she will make it through another
winter without some change in her situation. She is too fragile to advocate for herself
and therefore, I make this plea on her behalf.
I respectfully ask that you might consider interceding on her behalf to help her get to a
home environment that will not kill her. For more background on Gillians scandalous
case, please go to www.mcs-international.org and click on "Meet the Team", & then
on UK/Somerset. Her life depends on it.
Sincerely,
Julie Genser
founder and director
Planet Thrive, Inc

This letter is from Gillian's 80 year-old mother:

Help Us Save Gillian McCarthy

Please Write in Support of GillianToday

Dear Friends,

PLEASE - help us save Gillian McCarthy. Your help is urgently needed.

Gillian is facing imminent eviction from The Stopgap. The temporary wooden huts continue to leak and deteriorate and yet however poor her accommodation, The Stopgap has been the only place available and Gillian cannot safely be transported elsewhere. It seems the Authorities are intent on forcing her out of the only sanctuary she has, by continuing to withhold suitable medical and dental treatment including agreed specialist housing and Home Care and the basic necessities of life. Thus we fear they are engineering Gillian's extreme suffering and untimely death.

Frighteningly, should the eviction (or threat of it) make Gillian's health collapse still further, the Authorities have the capability to keep her, the main witness to their scandalous behaviour, hospitalised and isolated until this blows over and she "unfortunately" dies.

In order to try and protect Gillian from the latest inappropriate plans proposed by the authorities and in an attempt to get her desperately needed medical treatment, including housing and home-care reinstated, we need you to write a postcard/letter/fax/e-mail in support of the medically prescribed special housing Gillian needs - which has still not materialised 10 years after it was promised.

Your letters addressed to the Authorities, the Press and MPs etc. are aimed to protect Gillian from SSDC's dismissal of the seriousness of her condition, the cover-up of their failure to fulfil their promises and to stop them retrospectively justifying 10 years of lies, prevarication and sheer abuse of a "vulnerable adult" (in their words) by taking action which at best will cause extreme suffering and probably lead to Gillian's death.

By deluging them with postcards, letters, faxes, e-mails and even petitions, you can let them know that they cannot get away with this and sweep Gillian under the carpet as has happened with other patients.

If you write one postcard with one line on it you can make a difference. Evil prevails when good people fail to act.

Please write to as few or as many of the addressees enclosed as you can. Say as little or as much as you feel comfortable with. Speak from the heart. Let them know of your concerns. Not just for Gillian and her family but for neglected chemical victims throughout the UK and indeed World-wide.

Please encourage your friends, relatives, co-workers, church groups and patient groups to write as individuals or set up a petition. In fact anyone who is concerned about how the disabled are treated could be approached. Copying us in, if possible would be most helpful and good for morale.

The most important thing is to write promptly as time is of the essence.

Much more background material on Gillian's case can be found on her Meet the Team web page.

We have no funding or outside support for this campaign for Gillian's care. Gillian has helped many others including fellow sufferers. Now please help her.

Thank you.

Yours faithfully,

Barbara McCarthy

Dear Somerset Primary Care Trust,
I'm writing this in regards to Gillian McCarthy. I've had the pleasure to be a part of
a team at mcs-international.org and have got to know her. Her mini-bio is made
public at: http://www.mcs-international.org/meet_team_gillian.html (please read).
I have grown to love and admire her over the months. She is a true "inspiration" to
all of us who suffer from Multiple Chemical Sensitivity (MCS), 38 years for her now.
I know that she began being injured by chemicals from a local Factory, that she
grew up next to. Then through her fathers working conditions and "several" bad
working conditions of her own. Where she was NOT properly protected from VERY
bad working conditions and her health took an "avoidable" beating. She was
chemically poisoned, while working hard to get her Degree's.
Now, you have neglected to take care of her medical and dental health and her
housing, for the past 10 years. I hear that you are threatening her with an eviction
of the shack, that she lives in. This is inhumane!!
WHAT is the matter with you? Lord help this poor neglected wonderful lady!!
What is the matter with your "system" to let this travesty of justice go on, for so
long? Why aren't you taking care of Gillian's basic health care needs? This is the
worst ABUSE and cause of SUFFERING, I have ever heard of!!
I live in WA State in the USA and my friend Linda G., a 35 year MCSer, has at the
present time 4 different medical professional's coming to her home. They're helping her improve after her 3 week stay in the hospital last month. The State of
WA is paying for ALL 4 of her professional's.
PLEASE put yourself in Gillian's shoes and take some time to think!! And give her
the medical, dental and all of the health care needs, including housing. Any threat
of an eviction, will do nothing but HURT her health.
So I ask, in the name of God please "help" Gillian, whom you've chemically
poisoned over the years of her life. She is a highly intelligent wonderful lady with
amazing beauty, "inside and out" and deserves all of the BEST available
necessary care.

Hello, Where could I find out more information about the computer requirements? I have no idea if it would work, but I'm willing to call Dell and see if they have a charitable giving office of some sort. If Dell would donate the computer then the only cost would be the freight - which would still add up to a bit.

Click to expand...

Hi Pamb,

That is a great idea! I am ringing Gillian for the information as I type, but she isn't answering at the moment. I know the Dell computers are adapted in the US so that the user is protected from the EMFs and then shipped to the UK. They cost just under 4 000 , but it would be a wonderful advert for Dell if they were prepared to donate one to Gillian. It certainly wouldn't do their reputation any harm, given her extreme circumstance,unless they don't want to draw attention to the fact that their machines are capable of being a health hazard to vulnerable people, of course.

It would be wonderful if you receive a positive response and thank you for offering to help.

Write to us
Somerset County Council
County Hall
TAUNTON
Somerset
TA1 4DY

Perhaps it would be worth people writing to them or sending an e mail so that they know we are watching the situation.
Sorry i just wrote a longer reply but it gpot lost and i cant remember what i said. Please send my best to Gillian. Does anyone here know how to set up a fund for her. Fo example it could pay for things like the laptop or for a private nurse to make a visit for wound dressings etc, or tpo buy medical supplies, perhaps ultimately the house? could someone contact Noel Edmonds again maybe, give him a nudge.

Click to expand...

These are all great ideas, Justy, and Gillian says to say a huge thank you. She is also happy for anyone to have her phone number if you would like to talk with her. She is a mine of information on the biochemistry of our illness.
:headache:

I have been talking with Gillian and she suggested that if anyone is kind enough to help her with donations (which she badly needs as she has no money left now) that money is paid into the chemicalfree site. Her friend Nicki Greenham, who is very unwell herself, has set up the site and it will shortly receive charity status. Gillian is the medical advisor, but cannot act as such until she has a computer, of course, unless people phone her for advice and information.

I have also spoken with Nicki this afternoon and she suggests that if people want to donate for a particular need..............either the computer fund, medical supplies or the house fund (money just for the planning application would hold the eviction notice at bay).............that they can either use the Donate button on the home page of chemicalfree.co.uk or go to the chemicalfree.co.uk/sah page and send cheques or transfers to the two addresses listed there. It would then be necessary to e-mail Nicki and tell her how much you have donated and tell her that it is for the computer fund or medical supplies or the house. I'm sorry that sounds rather complicated. I'll list the links here:

Many thanks for info C.G. - at least some light on the horizon. Every need looks pressing at the moment and will make my donation for whatever best for Gillian via Nicki and Chem Free. Unbelieveable this sort of thing is happening now. All the best to you. Enid.

Thanks for the details for a way of donating to Gillian. Would it be ok if i reposted this to another site i am a member of? can we keep this for peoples attention on this forum by keeping the topic live, it would be great if we could get donations from people all over the world. Justy.